Thursday, January 17, 2013

“If you could be anyone using that ‘I am,’ who or what would you be?” asked John Fox, a poet and poetry therapist.

John was at the bedside of an 11-year-old boy at Blythedale Children’s Hospital in Valhalla, New York. The boy was lying down, with a breathing tube attached to a surgical opening in his neck that gave him an airway. He couldn't talk. When John and the hospital’s certified child life specialist first approached the boy, they asked him to raise his hand if he’d like to try some writing.

He did, so John read him a poem about metaphors that began:When I was a baby my heart / was a tiny fish swimming / in a gargantuan sea of things to come. When I was a toddler my heart / was a trout in a large lake of / thoughts and feeling.Now my heart is becoming / a salmon ready to go to the sea / of the troubles I will have to face…

(from Heart of Water by Orion Misciagna)

John then passed the boy a yellow pad of paper, which he balanced against his leg, and a pen. In silence, the boy wrote:

If I was a book I feel happy, caringa story for people to read like an adventureAs people turn mypages I feel glad that they enjoy mystory as they rushone page to anotherI feel the wind and the reader as emotionAnd to the last page the reader take hislast turn to my storythrough the whole adventure and emotion the readershuts the book and I feel glad that someone enjoys my story, my adventure.

“That just blew me away,” says John, who has worked with inpatients at Blythedale four times, for several days at a time. John, whose childhood included many hospitalizations and a surgery to amputate one leg below the knee, found writing therapeutic. He later trained to use poetry as a healing intervention with children and adults facing a range of health issues. In 2005 he founded The Institute for Poetic Medicine in Mountain View, Calif, a non-profit that funds projects and offers training and resources.

“One of the main things we want to do is honour a child’s voice and really let them know that their voice matters and is important, particularly in a setting like a hospital, where they could feel disempowered,” John says.

John works with children aged seven to 18—one-on-one or in groups of about seven.

He tailors his work to the needs of individual children and follows their lead, trying to inject a sense of playfulness and fun into the stressful hospital environment. John might ask a group “What are some of your favourite words?” then write them down on a board and work with the kids to make a group poem using these words.

“My tendency is not to go at things head on but through the creative process to allow things to unfold. Once that safety and trust is built, we get to the grittier issues the children are facing.”

A theme that often emerges is “I’m more than what you see,” he says. “The process is like a window opening up onto somebody” to reveal a rich, whole person that may be obscured by regimented days of treatment and therapy that focuses on what a child struggles to do.

“I remember one profound moment when a teenager with a degenerative illness who was on a gurney used an adapted keyboard to comment on a poem we were reading. Another young man said: ’I didn’t know you were so smart.’ He woke up to her being a real person with ideas he didn’t expect. These two teenagers were learning to listen to and respect each other.”

Even young children write in a revealing way. In a poem 7-year-old Madison writes:

Some hospitals tell me I can’t do something After they tell me I can!Then I feel BLUE.

A teenager with a painful condition that limits her movement wrote this poem after doing upper-body and arm dance-movements with a dance therapist mirroring her.

When we dance it feels like it’s a dreamI feel like I’m floating on a cloudI forget about the pain.

“The cloud and dream are transcendent and a clinical person might say they’re good distractions,” John says. “But from a creative point of view they’re powerful images that can hold that experience of being free.”

Lisa Levinson, child-life coordinator at Blythedale, and her colleagues draw on these images to support patients through the rehab process. “We’re often able to support connections between our patients and images in ways that can bolster them mentally through treatment," Lisa says. "The brain focuses best on one thing at a time, so if we can help a pediatric patient connect with an image, this distractive element can affect their perception of pain, acting as an effective pain-management tool.”

John says a critical part of his work is follow-up over time by certified child-life specialists who work with youth on themes generated in their poetry. “It’s a gift to be able to work with child-life specialists because they know the kids so well and their trust in me helps the kids to have trust. I need to build a relationship centred on the child and let the child be empowered to guide it.”

John tries to make poetry accessible to all children, including those who can’t speak. “Often they have a way of indicating letters or a picture board or a voice device. But we try not to struggle too much. ‘What poem would you like to hear?’ Maybe there’s a poem we can read and that the young person can enjoy hearing. The idea is that each of us is creative and important and to respect and appreciate that.”

John says many adults would be surprised “by the powerful things that children have to say.”

In addition to working with children, John says poetry is a powerful medium for health-care students. He recalls reading medical residents a poem written by a doctor, about to retire, to his psychiatrist, after he had recovered from a bout of depression. Part of the poem goes:

“One student raised her hand and said ‘What does that last line mean? That seems a bit extreme,’ with a real sense of consternation and confusion in her voice,” John says.

He explained that it referred to the psychiatrist touching the patient’s hand in a gesture of kindness and reassurance. “They’re not taught that those things matter,” he says.

“I try to get medical students to see a human being as a whole person, not just as Alex with cerebral palsy. To see that there can be a lot of surprises within someone, and to help them get out of the rut of seeing that person merely from a medical definition.”

John also works with parents of children with disabilities who are hospitalized. “So much of their concern and energy and focus is going to their child but they also are really in need of self-care and their voice is just as important. Sometimes I try to have them write about an experience where they take time out and recharge—maybe taking a walk in nature. I have to encourage them, letting them know that writing about what they really like won’t hurt their child.”

Some common themes that emerge in parent writing include “heartbreaking concern for their child, weariness, and a real deep faith in their child or in their love for their child,” John says.

5
comments:

I've been asked to do 8 1 hour sessions of art therapy with a group of students that have emotional issues. This might be very helpful. Using words and paint together. Thank you for this informative post. (I am in Florida too)

This is such a wonderful post! I know that there is a poet in residence at the Memorial U. medical school and now there is one at Mt. Sinai Hospital too (helping health care workers with stress and to process the difficult experiences on job). Here's a newspaper article about that: http://www.thestar.com/living/article/1292454--first-ever-poet-in-residence-helps-health-care-workers-at-mount-sinai-hospital

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.